Stakeholders Make Their Mark at IMFAR 2011

This is a guest post by Peter Bell, the executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division.

The International Meeting for Autism Research (IMFAR) celebrated its 10th anniversary this year. To commemorate this special occasion, the organizers returned to San Diego the site of the inaugural meeting in 2001. Although the city pretty much looks the same (one notable exception is the new Petco Park baseball stadium downtown), the landscape of IMFAR has undergone radical changes. While IMFAR is first and foremost a scientific meeting, the meeting has developed into a healthy blend of science and stakeholder perspectives.

The most notable difference between IMFAR 2001 and IMFAR 2011 is attendance. This year’s meeting attracted almost 2000 participants compared to just 250 when IMFAR began. The original meeting was a satellite to the very large Society for Neuroscience conference. Now IMFAR spawns its own satellite meetings. More than 1,100 research abstracts were presented this year over the course of three days. Ten years ago, there were fewer than 200 abstracts and the meeting lasted just a day and a half. Without question, the quality of research has undergone major transformation during the past decade.

The idea to create IMFAR was first conceived and supported by the stakeholder community. In fact, the first several years of IMFAR were organized by CAN and NAAR, which later merged with Autism Speaks, with strong support and guidance from the MIND Institute at UC Davis. Eventually, the International Society for Autism Research (INSAR) was formed to give autism scientists and students a membership organization to host the meeting and further develop the field. INSAR is now responsible for producing IMFAR each year while Autism Speaks and several other advocacy organizations continue to play a critical role and provide financial support in the form of sponsorships.

Two years ago, INSAR President David Amaral formed a Community Advisory Committee to ensure the stakeholder community is well represented and positively contributes to the success of the Society and its annual meeting. The Committee is chaired by Peter Bell from Autism Speaks (also a parent advocate) and co-chaired by self-advocate John Elder Robison, author of “Look Me in the Eye” and “Be Different”. Total membership includes six parent advocates, two self-advocates and one graduate student.

This year’s IMFAR meeting included many activities geared toward the stakeholder community. For the second consecutive year, one of the local academic institutions (University of California, San Diego) hosted an IMFAR Community Conference the day before IMFAR started. Over 300 attendees including parents, educators, therapists, clinicians and students attended this year’s event. One of the highlights of the conference was a panel of teens with autism who talked about their experiences living on the spectrum.

Once IMFAR opened on Thursday, the spotlight focused on several advocates who were honored at the Awards Reception. In addition to awarding Dr. Margaret Baumen from MassGeneral Hospital with the Lifetime Achievement Award, the INSAR board of directors created a new annual award called the INSAR Advocate Award for the important contributions that advocates make to research. Appropriately, the inaugural award was given to the founders of the organizations that started IMFAR ten years ago, Portia Iversen and Jonathan Shestack from Cure Autism Now (CAN) and Karen and Eric London from the National Alliance for Autism Research (NAAR).

The INSAR board also gave a Special Recognition Award (posthumously) to Bernard Rimland, PhD who is widely recognized for his discovery of the powerful evidence that autism is a biologic disorder and not due to poor parenting. Dr. Rimland later formed the National Society for Autistic Children, which is now known as the Autism Society of America, as well as the Autism Research Institute. This honor was especially fitting because San Diego was his home. His wife Gloria and son Mark were on hand to accept the award and enjoyed a standing ovation in memory of Dr. Rimland’s significant contributions to autism research.

A special surprise greeted those who attended the annual reception at the conclusion of day one. Under beautiful sunny skies on the rooftop deck of the Manchester Hyatt Hotel, IMFAR attendees were treated to a wonderfully entertaining performance by some of the stars from “Autism: The Musical”, the Emmy-winning HBO documentary. Not surprisingly, autism researchers know how to have a good time thanks to the musical talents and personalities presented by these teens.

On Friday, the annual Stakeholder Networking Luncheon, sponsored by Autism Speaks, was held to encourage greater interaction between the autism researchers and members of the stakeholder community. This year’s event attracted over 90 participants, up from about 60 the year prior. Most of the attendees were parents or grandparents, with about a dozen participants being autistic individuals and another dozen being siblings of a person with autism.

The luncheon included presentations by both scientists (INSAR President David Amaral from UC Davis, IMFAR Keynote Speaker Ricardo Dolmetsch from Stanford University and ATN Clinical Coordinating Center Director James Perrin from MassGeneral Hospital) as well as stakeholders (parent/researcher Sarah Logan from Medical University of South Carolina and autistic self-advocate/author John Elder Robison). Stay tuned for video highlights of the luncheon by Alex Plank and his crew from Wrong Planet.

During her brief remarks at the end of the luncheon, Sarah Logan, who is a PhD student at Medical University of South Carolina as well as the mother of a 14 year old boy with autism, referenced a quote from Albert Einstein: “A man should look for what is, and not for what he thinks should be.” She eloquently pointed out that as stakeholders, it’s natural (and easy) to become emotionally invested. Yet IMFAR presents science as science – with passionately curious individuals who can find harmony between the emotionally invested and the empirically driven.

Sarah further explained: “At the end of the day, one thing we all have in common is that we want a better quality of life for our loved ones living with autism. And that comes with knowledge. Knowledge is power. IMFAR is an amazing place to both gain, and share knowledge that will lead to improved quality of lives for all of those involved – parent, individuals, caregivers, families and siblings.”

Excellent points Peter.
It is wonderful that IMFAR finally acknowledged the invaluable contributions of the late Dr. Bernie Rimland.
Rimland was a doctor and a parent who stood up to the mainstream autism research bodies and said, “you are wrong. You need to listen to families. You need to study our children and pay attention to the environmental factors driving this epidemic.”

Well done Peter. This post made me miss Bernie Rimland’s voice too. So glad to hear Jon & Portia were recognized as well. Congratulations are in order I think, for the progress and your ability to recognize that even though the work is far from done, important work has been done and will continue.
All the best,
Heather